I cannot fall asleep with my bipap/home ventilator. Hypoglossal nerve stimulator?

[Jay51]

Hello everyone.  

About 4 years ago when I would wake up during the night I would feel a "buzzing" sensation in my left arm from my shoulder to my hand.  It would only happen when I woke up at night.  My PCP did x-rays and MRI and it showed no nerve pinching.  

I saw my Chiropractor and she said 2 patients during here 20+ year career presented with my symptoms and it turned out to be sleep apnea.  By now the "buzzing" or "fast thumping" or "shaking" sensation occurs in the back of my head, neck, and chest also.  It only occurs when I wake up at night (I wake up around 5 or more times each night).  It goes away after a few minutes and I go back to sleep.  It does not occur during the day. 

Home sleep apnea test from Lofta revealed:  Severe sleep apnea.  42.5 AHI scale.  My oxygen saturation (o2 sats) got down to 79 during the night also.  My resting heart rate is in the mid 50's - I am a former athlete and very lean.  It practically doubled during sleep to 97 the test showed.  It said severe obstructive sleep apnea and mild central sleep apnea.  I feel to the moderate AHI category when I slept on my side, but the severe 42.5 AHI when sleeping on my back.  

Saw my PCP to do an overnight hospital sleep study to get my insurance involved.  Respiratory Therapist doing overnight study started with a cpap at very low pressure.  I did manage to fall asleep after about 3 hours, but woke up several times to the noise of water "swishing" in the line.  AFter the test, RT told me that just as I am about to fall asleep, I stop breathing.  She said that I was very sensative to all increases in cpap pressure during the test as she tried to increase it during the night.  She said, "a cpap machine is not going to work for you.  You need a bipap machine."  

Got rental bipap machine and was so excited to finally try it.  After 30 minutes with it on trying to fall asleep, I felt like I was suffocating and turned the machine off.  I thought something was wrong.  A

A week later I got my Resmed Aircurve 10 St-A home machine. I was excited again.  I tried it at night, and again quit after about 30 minutes because I felt like I was dying (suffocating).  Called RT at the home medical supply co. (DME).  She said to use the machine during the day to get used to it.  For about 2 months I used the machine during the day.  I used it around 45 minutes or so each day when I tried to take a nap.  I was never able to fall sleep using the machine taking a nap in about 60 attempts.  Actually, I used the ramp 20 min and was able to fall asleep, but immediately when the ramp turned off an unexpected huge blast of air jolted and startled me and woke me up wike awake.  I finally got the courage 2 months later to try it at night again.  I tried to fall asleep for 2 hours this time, but could not.  1.  Sometimes I would want to breathe out, but the machine was forcing air into me.  and 2.  I would be relaxed between breaths and not expecting anything and the machine would blast me and jolt me and startle me awake.  I called RT again.  Settings on bipap were:  15 max ipap; (I think 8 for min  epap) and other number was 4.5  RT told me that this particular machine has caused some people to have the same problem.  She called it, "double stacking" I think.  Trying to breathe too quickly and out of synch withe the patient.  

I saw PCP again.  She consulted me to an ENT (Ear, Nose, Throat) Dr. who specializes in sleep apnea.  He stuck a small camera down my nose into my lungs and said, "You do would not benefit from any surgery I can do."  He said my anatomical structure looked very normal.  He also said I am now down to about 2 options at this point.  I try reducing pressure more and try a more advanced machine, or 2.  Have hypoglossal nerve stimulator surgery - a stimulator (like a pacemaker) stimulate the nerve to the bac of the tongue to contract while sleeping to keep my airway open.  

About 2 weeks ago got new home machine:  Resmed Astral 100.  When I saw ENT and RT, they both asked me in my opinion, what pressure I thought we should start with.  The 15,8, and 4.5 on the previous Aircurve ST-A machine felt way, way, way too high and way too fast for me I tole them both.  The RT set the Astral 100 as low as she possibly could set it. 

1st night trying the Astral 100 - I almost fell asleep with it (I have used a full face mask and got a nasal pillow to try also), but the alarms on the Astral 100 went off over 20+ times during the 2 hours I tried to fall asleep with it.  Rt came by my home here 2 times with week and stopped the alarms and reset pressure a tiny bit she said.  

2 nights ago - another attempt to try to fall asleep with Astral:  after 3+ hours trying to fall asleep, I gave up and took the mask off and turned the mask off and went to sleep (without the machine).  RT also told me when she observed me at my home twice that "when I relaxed and was about to fall asleep, my breathing became very shallow.   So the 2 main things keeping me from falling asleep is:  1.  At times I want to breathe out and the machine is forcing air into me - maybe because my breathing becomes more shallow, but the machine does not synch with me.  2.  At times, I am between breaths and very relaxed and a blast of incoming air jolts me awake and startles me.  Also, I forgot to mention that mainly with the Aircurve 10 st-a, a lot of air went into my stomach in a short period of time.  I would be relaxed, and when the machine blasted me with unexpected air, the very 1st part of it would go into my stomach.  It made a different sound when the air went into my stomach, and I felt it, too.  With the pressure lower on the Astral now, I notice less air in my stomach, but still some.  

RT says that she is running out of things to try and options.  When using either the Aircurve 10 st-a or Astral 100 during the day when I am awake at my desktop, it is so natural, I forget I am using it.  The problem occurs at night just as I am about to doze off.  That is when me and both the Aircurve 10 st-s and Astral 100 severly butt heads.  I feel we can't synch.  I think the machines are trying to deliver air to me when apneas and hypoapneas are occuring, but I cannot sleep while this is happening.  Why should I keep using a machine that will not allow me to fall asleep?  

One other thing I forgot is this:  during the 2 months when I tried to use the aircurve during naps:  I was never able to fall asleep with it (except that one time and then it woke me up when ramp turned off).  I have not used OSCAR, but I looked at my date on myair.com   It showed I was having around 10 to 20 apneas and hypoapneas during the 20 to 30 minutes that I was trying to fall asleep but the machine would not let me.  Interesting I thought. Why?  

I have a major decision to make now.  I feel like giving up on all pap therapy and getting the hypoglossal nerve stimulator surgery.  As far as efffort goes, I feel I have just about exhausted my efforts.  I feel much better on nights that I do NOT use a bipap or home ventilator machine.  Not great, not bad, but infinitely better than when I try to use a pap machine overnight.  The nasal pillows give me a headache very shortly and cause a loud snoring sound when I try this mask as opposed to the full face mask I usually use.  

I have read some posts on this forum and I realize that sleep apnea sufferers have experimented/tinkered with their machine (out of the same frustration I am feeling right now probably) and have found some solutions that I may have not tried yet.  All comments and recommendations (both + and -) are welcome by me as to how to prodeed from here. (Changes to machine settings or equipment?)

Has anyone ever had the hypoglossal nerve stimulator surgery to correct sleep apnea?  Has it worked?  As light a sleeper as I am, I don't want to have this surgery and then have the stimulator wake me up at night when it triggers my tongue to move forward while I am asleep?  Or will this be the permanent, sustainable long term solution to my sleep apnea problem?  Will the hypoglossal nerve stimulator surgery work for someone like me with shallow breathing, etc.  (42.5 AHI, etc.)

I am stil searching for solutions to 3 problems:  get rid of the "buzzing" sensation each time a wake up at night.  2.  Keep my nightly o2 sats from falling so low down to 79, and 3.  keep my heart rate from doubling during sleep.  

I want to thank whoever's idea it was to start this forum/board.  Thank you very much.  Thank you to the medorators.  Thank you to the followers and posters on this forum.  I do trust someone will provide me with the correct information as to how I should proceed from here.  I used to work in the medical field, and my low o2 sats and heart rate (and blood pressure probaby goes up also) are very concerning to me at this point. I do not want an unexpected "health crash" in the future becasue of sleep apnea.   A part of me wants to give up completely, but  will keep searching until I find a permanent, sustainable, long term solution.  Thank you very much.

[Sleeprider]

You have some very advanced machines. I'd like focus first on the ST-A because it is supported by OSCAR. That means we can see exactly what happens at the time you fall asleep and are aroused by the machine. Oscar gives us the ability to see every breath you take and how the machine is applying pressure. Please download OSCAR and load data on the SD card in your machine. Directions on Organizing your Oscar Charts and attaching an image file are linked in my signature. It will also help if you can document the settings on your machine, particularly mode, EPAP min, PS min PS max and any volume and breath rate settings.

A hypoglossal nerve stimulator like Inspire is used for mild to moderate obstructive sleep apnea to cause a tightening of the tissues in the soft palate. It does not appear you have simple obstructive sleep apnea. Please elaborate on any relevant neurological, pulmonary or cardiac diagnoses. If you have any sleep studies, posting that information with the personal information redacted may be helpful in understanding what conditions you are treating.

I'm not sure what might contribute to a buzzing sensation. Your oxygen saturation levels may be causing lightheadedness. Tachycardia is a common result of the adrenaline shot that comes from apnea or a breathing failure.

[Jay51]

Thank you very much Sleeprider.  About 2 weeks ago I had to give the Aircurve 10 ST-A back to the medical supply company (trade it in for the Astral 100 I currently have).   Will OSCAR work on the ResMed Astral 100?  If not, I can try to retrieve as much data as I can from myair.com and upload it here (actually I have not even tried that yet with the Astral.  Hopefully I could do the same thing?)  

As far as medical conditions, history:  I am a 52 year old male.  When I had bloodwork done from physical at age 50 by PCP, he said, "you have the best bloodwork I have ever seen."  Nothing abnormal at physical at age 50.  Nothing in my past medical history either.  Except 2 concussions playing football.  Several broken bones from sports.  Also 2 major car accidents.  Some alcohol abuse in my early 20's.  But all of these things  happened in my early 20's.  The sleep problems starting occuring in my early or mid 40's.  Blood pressure normal.  I am a former athlete (almost became a professional athlete) and consider myself in good shape.  Only problem is tiredness during the day at times now. 

My mother was diagnosed with Myesthenia Gravis 11 years ago.  But research says that it is not inheritable.  It is an autoimmune disorder.  My father's mother died of Parkinson's Disease, but he has not been diagnosed with it or any other family members.  FAther had a heart attack at age 65 with triple bipass.  He is now 88 and doing well. Mother 85 is doing well also.  Nothing major in other family members/relatives medical hx either.

[Jay51]

I just tried to attach a 15 page home sleep study report by Lofta, but I get an error message that cannot attach this file.  It has lots of info:  diagnosis, total sleep time in each stage, AHI, RDI, ODI, snoring stats, sleep position stats, etc.  Are any of these what you are looking for?  I can try to individually upload a page or a couple of pages if I can.

[SarcasticDave94]

Just my opinion, in part based on knowing what I have medically and the quacky doctors reluctance to get me ST-A with my Central Apnea, COPD, heart PVCs tossed in too. Yet no we don't think you need ST-A thing.

This said to state you must have something medical to go from ST-A to Astral. Doc must have some medical reason. They're not putting you on a plus $10k machine for no reason. This isn't just to treat Apnea. IMO you need to point blank ask why.

I don't think OSCAR is yet able to produce charts from an Astral. The Astral uses a USB jump drive (connected on the back of the unit) versus ST-A and lower machines using an SD card.

[Sleeprider]

That is a good history and doesn't give a clue why a noninvasive ventilator (NIV) should be used. What were the number and type of events in your sleep study(s)? What we need to determine is if you have central or complex apnea or some neurological, muscular or drug issue that prevents you from spontaneously breathing during sleep. The Astral 100 is not currently covered by Oscar, but I'll ask GuyScharf if he is interested in seeing some data. If so, he will ask for a copy of the data to be uploaded to a dropbox account. The Astral requires a USB memory stick to download data. I think any Oscar data from any of the past machines you have used would be enlightening. You just don't meet the profile of someone that needs a NIV. With the Astral, we still need to know your settings, and at this point, why this level of NIV is needed at all.

You mentioned a home sleep study that determined severe obstructive apnea and mild central apnea. This has not been verified with a clinical polysomnogram (PSG)? It is hard to believe that without certain comorbid health conditions and a clinical verification of medical necessity that you have been issued this very high level NIV equipment, and all without an observed clinical titration. I've never heard of this. Based on everything I have read so far, you have complex sleep apnea with no contributing health conditions, and should have been put on a simple Resmed Aircurve 10 ASV. This machine provides a nice adjustable EPAP pressure and a low pressure support, but the pressure support increases and decreases on a breath by breath basis to provide a backup breath when needed. It is a very common machine with Apnea Board members.

Your original question was whether hypoglossal nerve stimulation would be useful. Assuming you have apnea, and oxygen desaturations, and do not tolerate CPAP, BiPAP or NIV therapy, then supplemental oxygen delivered by canula would probably be sufficient to keep your oxygen levels in an appropriate range.

[Jay51]

Thank you very much Dave.  I am a retired Occupational Therapist.  Worked in many hospitals, home health, worked with Medicare, read hundreds of patient's medical charts, etc.  My guess as to why they moved me to from the Aircurve 10 st-a to the Astral 100 is based on 2 things.  1.  I called the RT at the DME and complained heavily (and justifiably) about the aircurve 10 st-a.  She mentioned several other patients have had the same complaint.  She mentioned the term, "double stacking" of breaths.  I think the machine can fire off 2 consecutive inhalations too quickly at times.  Triggers twice instead of once.  Rapid fire back to back with patient not ready for.  2.  The ENT Dr. said a change of machine might help also because of my "dynamic" sleep apnea with the "central" component to it also.

[SarcasticDave94]

If I'm on the same page as you with knowing what you're referring in this "double stacking", where I'd likely called it air stacking or air trapping which I've had myself on the ResMed AirCurve 10 ASV. The time controls with adjustable backup rate and Ti Min/Max on the ST-A should have corrected this for you. It did for me.

But as Sleeprider states, if you have Complex Sleep Apnea, ASV might have worked. It's not even mentioned as one you've tried.

You'll need to get yourself the detailed test results to help us know what's going on. You should have had a lab PSG diagnostic test and probably Titration.

Maybe I should become a patient with this doc of yours. I'd be on the Astral the RT said I should have had 2 years ago.

[Jay51]

       

Diagnosis from Lofta home sleep study.

[Jay51]

I will try to attach the remaining pages of the home sleep study 3 at a time maximum to each reply if I can get to it tonight or tomorrow.  I have not had access to the overnight hospital sleep apnea study records.  I have not had access to the 3rd home sleep study the DME company gave me about a month ago either.  I am not an expert in this field either:  sleep apnea, cpap and bipap and home vent machines.  But I will try my best to answer any questions that I am able to also.  I do appreciate all the comments so far.  Much appreciated.  Thank you Sleeprider and Dave (and anyone else who replies.)